Some movie theater lackey, short on pay and long on boredom and the need for a little drama to spice up the day, called mall security to remove Robert Saylor from the theater as he refused to leave his seat, while his aide went to get the car.

They couldn't even wait for her to return, to see if she could motivate him.

They couldn't just let it go.

For the cost of a $12.00 seat.

A young man with an obvious intellectual disability goes to the movies, enjoys the film so much he wants to watch it again, refuses to leave his seat. Mall security, three off-hours Frederick police officers moonlighting for a few extra bucks, are called, and come to the scene. Not liking Mr. Saylor's attitude, they attempt to restrain him, cuffing him with 3 sets of cuffs (necessary due to his size) and turning him over with his face to the floor, asphyxiating him and causing his heart to stop. He regained consciousness briefly before passing away in a moment of terror and confusion, away from anyone he loved, at the hands of the law-enforcement he idolized.

I honestly thought this was a case that would take months, if not years, to resolve, and the conclusion that came forward a few days ago, barely 2 months from the death of this young man, was staggering.

Not Guilty.

Oh, so he had a heart problem! And other health issues related to Down syndrome. That justifies it. Makes it okay. Makes it a logical outcome of the events that transpired that fateful night. They said he was susceptible to sudden death.

You know what? More than 50% of people with Down syndrome have heart defects. Many with Down syndrome have obesity. Other conditions. Susceptible to sudden death? Certainly more likely if placed under the brutal and unnecessary conditions Robert Saylor was subjected to in January.

The guilt is two-fold.

The police officers who strong-armed a man without waiting for the return of his aide, for refusing to leave his seat in the theater after the end of that showing are guilty of exerting unnecessary force on a man with a disability.

The theater lackey who reported Mr. Saylor to security because he refused to leave his $12 seat and wanted to stay through the next showing is guilty of making a very small situation into something catastrophic. For what? For twelve dollars??? In a theater full of empty seats, they just had to have that one vacated? I sat through plenty of additional movie showings when I was a kid. Nobody cared. The lawyer for the Saylor family stated, “One of the options (the police) had was to simply tell the theater manager, 'We’re just simply not going to deal with this.’ They should have and could have just walked away.”

And the theater manager should have and could have let. it. go.

It could have been my kid. The one whose enhanced genetic make-up gives her license to be just as stubborn, who can make the refusal to put her shoes on to go out somewhere into a precursor to war.

This could have been your kid.

Please sign this petition requesting additional investigation into his death, requesting that this kind of thing not be allowed to happen again.

Thursday, March 21, 2013

Today is World Down Syndrome Day. I'm sure most of you know this already, but for those of you who don't, it's kind of a big deal. Not like every day isn't a big deal, isn't special and celebrated, but it honestly feels so good to know that the whole world can come together on this day to really, truly, appreciate and celebrate our chromosomally-enhanced loved ones.

In observance, I'm re-posting my text from last Friday's "Who I Am" post, and sharing this amazing video from IDSC. This is seriously a good one!

Who I Am﻿

﻿

Left: Me, pregnant. Right: Me and Samantha, 2 years and 1 day from the date of the original photo, in the same spot.

My daughter has Down syndrome. Who she is can be only partially summed-up by adjectives -

smart...

funny...

beautiful...

compassionate...

stubborn...

determined...

energetic...

enthusiastic...

kind...

polite...

But that's not all of who she is.

She is my daughter. She is the light of the lives of her father, her grandparents, and me, myself. She is a student. She is nearly 7 years old. She likes playing doctor, reading books, eating spaghetti, posing for pictures, playing computer games, crawling into our bed at 5:30am and going back to sleep for a bit longer, watching Arthur or Curious George, going to school, traveling...and the list goes on and on and on...

She is close to being able to dictate this post herself, to tell you, from her own lips, who she is. But until that time, I don't feel that my telling you who she is is entirely fair.

But I can speak for myself. Who I am, as a result of who she is. The resulting woman she has created by coming into my life, extra chromosome and all.

Who I am.

That's what I can tell you.

I am a mother, first and foremost. I am a mother who has learned more than I ever thought possible about a world stretching out well-beyond the one that accompanies the typical experiences of motherhood.

Down syndrome, the presence of the extra 21st chromosome being shared within each and every cell in my daughter's body, has made me different. I don't mean to say that it's just Down syndrome that has made me who I am, but it's Down syndrome *within* the person my daughter is that has helped to shape me.

If that makes sense.

Iam my daughter's mother.

I am ready to meet new challenges head-on, to take on the world if it means providing the best opportunities for my daughter.

I am passionate about a cause.

I am educated in much of the minutiae of childhood development that most parents take for granted.

I am strong.

I am a person with so much more patience and understanding than I ever though I was capable of.

I am part of a community that has embraced and welcomed us with open arms, a warm and loving club full of people sharing like-interests and experiences.

Tuesday, March 19, 2013

I've been thinking about this again lately. Yessssss, about public restrooms. And who, in their right mind, as in lucid and not on crack, thinks about public restrooms on a regular basis? Probably all of you, if you're parents. Well, correction, mothers. I kinda doubt my husband loses much sleep over the topic...

A few months ago, I published this post about Public Restrooms and the 6-Year Old. I expressed concern, worry, and, yes, near-paralyzing fear, about allowing my daughter to exert her independence and (gasp!) use a public restroom stall on her own without me completely sanitizing it first. I knew it would have to happen one day, but not anytime soon, if I could help it. The responses that post drew were thought-provoking and very, very helpful. Thank you to all of you that commented. It got me thinking, could I really do it? Is it really all that bad, and is using a public restroom toilet seat without wiping it, putting a strip of toilet paper on it and balancing on one cheek only *really* going to make her sick or kill her?

The answer to the second question is most certainly no.

I gained a lot of perspective that day, particularly moved by a commenter with Crohn's Disease, who said she/he is not often afforded the luxury of time to inspect and clean a toilet seat before sitting on it. Actually, that comment really humbled me, and I have to thank them for giving me a bit of a kick in the butt (oh, the irony!).

About a month ago, just a day after ending Samantha's use of Miralax in favor of the natural remedy, Fruit-Eze, the two of us were shopping in Target. It was apparent she'd been having some cramping as a result of the changeover, her tummy getting used to the new stuff. After checking out, we decided to get something to eat at the lunch stand, but after placing our order, she suddenly doubled over and said she needed to use the bathroom. Luckily, it was only a few feet away, so off we went. Before she went into the stall, I told her I wanted to wipe down the seat, but she pushed me aside and said no, went in, locked the door, and did what she needed to do, on her own.

And you know what? I was completely okay with that. No, I was better than okay with that. I was at peace. I was proud that she knew her own urgency, proud that I could recognize that and step aside, proud that all I required was an extra careful hand-washing for her afterwards.

Fast-forward to this past weekend. The three of us were furniture shopping at Bob's Discount Furniture. Now, ordinarily I wouldn't mention the name of the random furniture place we were shopping at, but this place was awesome. There was a cafe-area with tables, huge candy-dispensers, ice cream, Teddy Grahams, coffee and hot chocolate, all free. A children's movie played on a flat-screen suspended from the ceiling, making Samantha one very happy little girl, and making Mommy and Daddy feel comfortable, and just a little liberated to look at the furniture nearby without needing to keep an extra-watchful eye on her. Next to the cafe was a big sign that said "Restrooms." At one point, standing just out of earshot and looking at some furniture (naturally!), I glanced over and saw her walking towards the Restrooms arch. She began to head to the right, then stopped, no doubt due to the sign that said "Men" on the door, then backtracked to the left and into the Women's room before I caught up with her to congratulate her for her initiative, and to make sure she was okay. She went into the stall (the seat was still up from cleaning, so I instructed her to pull it down), closed the door, latched it, and relieved herself, freeing me up to use the stall next to hers, a luxury I have not ever been able to enjoy, needing to always have her right there with me, begging her not to open the door to the glory of my dropped trou.

I am growing here.

She is learning independence and privacy.

I'm forever reminded of a blog post by Dave Hingsburger that I read last year. It really affected me. He recounted entering an unlocked unisex public restroom (the kind that has a single toilet, rather than stalls) and seeing a woman with Down syndrome, naked from the waist down, sitting on the toilet. Instead of being horrified that a man had just come in, she looked at him and smiled. No modesty, no fear.

Friday, March 15, 2013

My daughter has Down syndrome. Who she is can be only partially summed-up by adjectives -

smart...

funny...

beautiful...

compassionate...

stubborn...

determined...

energetic...

enthusiastic...

kind...

polite...

But that's not all of who she is.

She is my daughter. She is the light of the lives of her father, her grandparents, and me, myself. She is a student. She is nearly 7 years old. She likes playing doctor, reading books, eating spaghetti, posing for pictures, playing computer games, crawling into our bed at 5:30am and going back to sleep for a bit longer, watching Arthur or Curious George, going to school, traveling...and the list goes on and on and on...

She is close to being able to dictate this post herself, to tell you, from her own lips, who she is. But until that time, I don't feel that my telling you who she is is entirely fair.

But I can speak for myself. Who I am, as a result of who she is. The resulting woman she has created by coming into my life, extra chromosome and all.

Who I am.

That's what I can tell you.

I am a mother, first and foremost. I am a mother who has learned more than I ever thought possible about a world stretching out well-beyond the one that accompanies the typical experiences of motherhood.

Down syndrome, the presence of the extra 21st chromosome being shared within each and every cell in my daughter's body, has made me different. I don't mean to say that it's just Down syndrome that has made me who I am, but it's Down syndrome *within* the person my daughter is that has helped to shape me.

If that makes sense.

Iam my daughter's mother.

I am ready to meet new challenges head-on, to take on the world if it means providing the best opportunities for my daughter.

I am passionate about a cause.

I am educated in much of the minutiae of childhood development that most parents take for granted.

I am strong.

I am a person with so much more patience and understanding than I ever though I was capable of.

I am part of a community that has embraced and welcomed us with open arms, a warm and loving club full of people sharing like-interests and experiences.

Thursday, March 14, 2013

Thank you to everyone who entered to win the $25 Walmart giftcard on my Olay Total Effects post. I was very excited to have gathered a few more readers of my F&F4Kids blog and Facebook page! It's been kind of fun trying to build them both up, and I admit I'm a little behind in my posting. But it'll come...

Anyway, I'm happy to announce that the winner of the gift card is Livivua Chandler!

Congratulations! Your gift card went into the mail yesterday.

I am hoping that there will be more such giveaways in the not-too-distant future, and I hope none of you are judging me too harshly for it. I just happen to like free stuff, and I just happen to like when more people come to my blog and do my bidding so they can get extra entries to win something. :-) I call it "pimping" myself out. I know it reeks of sellout, but you know what? It's my blog and I don't actually care. If it makes someone happy, including the drawing winner, me, and the vendor that sent me the free stuff, it's really win/win/win all the way through! I'm also just a teensy bit flattered that someone deems my readership strong enough to want to use me by asking me to review something. It's like someone coming up to me and telling me I'm pretty. They can do it until the cows come home, and I'll blush and bask in it all the same every time. That kind of stuff never gets old!

Of course I'll be even happier when someone wants me to review, say, a car. Or a timeshare-free vacation somewhere for 3. Or, uh, money. Hehe. You get the picture...

Tuesday, March 12, 2013

I was going to do a post on memory in individuals with Down syndrome, a bit of a musing, playing out my thoughts, trying to answer my own questions, soliciting answers from all of you, but upon conducting a quick Google search, I have discovered that I have a lot more research to do. I had been wondering about the differences between short-term and long-term memory, wondering if short-term memory, something that's generally known to be a deficiency for our chromosomally-enhanced friends and family members, isn't, in fact, necessary to achieve before it can become long-term memory. I mean, wouldn't it make sense that you'd have to learn something in the short-term to be able to store it for long-term? And with the visual strengths these individuals have, as evidenced by ability to learn sight-words over phonics, manipulatives over verbal concepts, etc., how does that come into play here? Does visual strength equal something akin to eidetic (photographic) memory? Can Samantha's uncanny ability to remember where something was put/left/forgotten-by-me mean something that sounds considerably more attractive than the "poor short-term memory" that we see bandied about so frequently?

And, again, my research needs to be done first. In the 60 seconds before I began this post (in this excellent article), I learned that in people with Down syndrome, it's more a deficiency in verbal short-term memory that they posess, thus the visual strengths. And for long-term memory, there are deficiencies as well, which makes sense. There's something called explicit memory, which involves things like facts and concepts that take a conscious effort to recollect, and something called implicit memory, which, according to Wikipedia, is "a type ofmemory in which previous experiences aid in the performance of a task without conscious awareness of these previous experiences." We rely on this type of memory for everyday life as a sort of "procedural memory." We have routines. We do things because we've done them before. We know how things work because we've seen them work before. We know which piece of a puzzle is missing because we know what the picture is. I read that people with organic amnesia also are impaired when it comes to explicit memory, whereas their implicit memory is relatively intact.

Fascinating stuff. I know that there is research being conducted to improve memory and cognition in people with Down syndrome, and reading about memory has really opened my eyes to things I subconsciously already knew - I mean, it makes sense, but now I have the words and the descriptions to understand a little bit more.

I'm always blown away by the kinds of things Samantha remembers, so I've always wondered how there could be such widely-acknowledged impairment. However, now I understand that her excellent memory is certainly procedural, visually-instigated, implicit. Concepts are difficult for Samantha to understand. This is why Math and Science and History can be challenging for her, unless they're taught using manipulatives, or hands-on experimentation. With this knowledge, we will be requesting pull-outs for Math at her next IEP meeting. I know that we need to play to her strengths, rather than push for equal learning with the rest of her peers just to prove a point. It just won't work. I'm not going to cut my nose off to spite my face, at her expense. If we want her to be successful, want her to feel good about what she's doing, want her to learn instead of feeling frustrated and giving up, this is most definitely what we want to do.

Friday, March 8, 2013

Before I start, I just want to remind everyone that you have until tonight to enter for a chance to win a $25 Walmart gift card from Olay! Just visit this post from the other day.
It's been an eventful week. Actually, a week I'm not sorry to see come to an end. Not like it was a bad week overall, but it was a little out of the ordinary in a lot of ways. This week we saw an unsuccessful first swim lesson, a bout of pink eye (causing me to work from home on Tuesday to care for the Princess), my husband hit the half-century mark (which isn't a bad thing, just relevant), his receipt of his AARP card the day before (tell me that isn't cold and cruel?), the cancellation of his birthday party due to an impending, much-anticipated, "monster" snow storm, the incredible disappointment of said "monster" snow storm that barely amounted to much (and shut down the whole region for no reason and causing me to work from home again on Wednesday), the making of a (successful) snowman, an impromptu "little-bit-of-snow-day" celebration with some neighbors for Steve's birthday, and...oh, I guess that's it.

That's enough, right?

Samantha and the dirty snowball. She rolled the head all by herself!

By the way, can I just say that putting drops in the eyes of an anxious child is not. fun... And the crazy thing is, her resistance is primarily to me. Daddy? Not a problem. So the 5 days of drops supposedly 3x/day is really 2x/day since I'm the only one around in the mornings to do it.

Anyway, happy weekend to you all, and to my US peeps who don't live in Arizona, don't forget to change your clocks on Saturday night!

Wednesday, March 6, 2013

***I'm re-posting what I'd written one year ago. It's a message that shouldn't just come up once a year on the relevant day, but should be set as a daily reminder to everyone. Please remember, if it hurts even one person, please don't say it.***

﻿

Today is 3/6, the day to Spread the Word to End the Word.

And what would that word be, you may be asking?

Retard.

Retarded.

More commonly known in this circle as the "r-word," because it actually hurts to say it. And in honesty, it actually hurt to type it, and hurts to read it, too.

And for those of you out there who may be reading who may not have a connection to the world of people with intellectual disabilities, this doesn't just mean the intentional use of the word directed at a specific person. This also means the common, everyday usage becoming more and more a part of peoples' standard vernacular, in which the word is used to describe an idea, or an activity, or a group of people, or even oneself inthe context of humor, or distaste.

And you know what? That Hurts, Too. It hurts people with intellectual disabilities and their families, demeans them, perpetuates a stereotype and says it's okay to laugh at them, to make fun of them, to consider them not worthy of RESPECT.

How wonderful it would be if that were the new R-Word (deserving of capitalization now)...Respect.

Beautiful.

Honorable.

Valued.

My daughter has Down syndrome.

And she isbeautiful.

Andhonored.

And valued.

She isworthy.

Please...take the pledge today at www.r-word.org, pledge to stop using that word. Pledge to help educate those that do. Pledge to help make the world a better place for people like Samantha.

After so many years of dilly-dallying, going back and forth on price, time of year, scheduled vacations, etc., after making excuse after excuse, I finally took Samantha to her first swim lesson on Sunday. About a year ago, we'd gone for an evaluation, to give one of the instructors some clue as to her present level (none), and Samantha was very receptive to her, following directions and cooperating. However, the lessons never happened due to our vacation schedule and then subsequent maternity leave of the instructor. But this time, there was far less cooperation.

I brought my bathing suit just in case, prefering to not have to suit-up. And I didn't. Uh, at least not in the first 5 minutes. But when it became clear that Samantha would not move from her perch on the step in the photo above, no matter how nicely she was interacting with the new instructor, I knew I'd have to stuff my out-of-shape body into my wetsuit and brave the chilly water myself. Yep, it was chilly. I almost couldn't blame Samantha, a child who absolutely loves the water herself, regardless of temperature.

Actually, I'm not sure what was going on with her, but once I was in the water it took a lot of coaxing to get her to even come in with me, and at that, she wouldn't let go of her death grip around my neck. She is usually much more at ease in the water, but I guess the fact that she was being instructed and expected to do something, she put the brakes on.

A half an hour went by, with nothing more accomplished than the instructor getting her to blow some bubbles in the water. But you know what? I was super-happy with that! I need to remember that things like this require baby steps, a little bit of leeway for the learning curve that's sure to accompany eventual success. I have to not look at it as a failure on Day 1, but as a single step in the long process required to reach the goal of self-sufficiency in the water.

We'll get there...

By the way, please don't forget to visit this post for a chance to win a $25 Walmart gift card! I'll take entries until Friday!

Monday, March 4, 2013

At 40-something, I have the skin of a teenager. Like, really. And not the soft, dewey, rosy-cheeked kind that looks beautifully sun-kissed even in winter, but the oily, combination kind that you can probably play connect-the-dots with. Actually, I misrepresent a bit. While "the skin of a teenager" means that wrinkles are scarce, my skin has gotten a bit more "normal" over the last year or so, with breakouts also becoming scarce, and the return of some evenness of tone. I can finally feel a bit more like an adult and have a few more options available to me in skin-care products and make-ups. TMI, really.But, it's relevant. I'm not being paid for this post, but Olay recently gave me a sample of Olay Total Effects tinted moisturizer with sunscreen to try out and review, along with the product information. My whole life I wished to be able to just throw on some tinted moisturizer and run (okay, not my whole life, but certainly since I was about 12), able to wear something sheer and non-cloying. And this stuff, I must say, is pretty great. I tried it over a couple of weekends. It went on smooth, had just enough coverage to add some color and a bit of healthy glow to my deathly pallor, and evened out my skin tone. And it felt good on my skin all day, never dry or oily.By the way, the bottle was very, very cool! Not sure how it works, but I like the swirls...

Olay states that Total Effects fights the 7 signs of aging:

Fine lines and wrinkles: reduces the appearance of fine lines and wrinkles

I am really looking forward to using this product in the summer, when a tinted moisturizer with sunscreen becomes even more necessary. While I love the product, I'd say the only drawback, which I hope Olay can correct, is the smell. I know "smell" is a harsh word, but I don't know how else to describe it. It just didn't sit all that well with me. It wasn't scented - it was just the odor of the base products. But it won't stop me from using it. :-)